Lynne's story - 23 years post MDS diagnosis and her life has turned out much better than expected.
In 2000 I had been breathless and tired (a problem I recall having on and off since the age 11 when I was found to be anaemic) and was referred again to haematology.
(Every now and then I would be referred to haematology in various places I lived, no diagnosis of a condition). This time I was diagnosed age 45 with MDS. My consultant did say it was a blood cancer but didn't explain prognosis and said I was very ill.
My husband and I were shocked on reading up about MDS. Talking to my consultant he gave the impression he thought my low risk MDS would progress rapidly.
I had transfusions then EPO injections which thankfully worked. My consultant did regular checkups and was always there when needed but avoided talking about prognostic scores. He always said make the most of your life and the time you have.
We felt I wouldn't be here for my 60th and I am now 68 years old. All that worry each time you have a blood test, each time your blood drops really takes its toll.
One day, while talking to patients in the waiting room in a worse condition than me, I had a revelation that I could walk out of the hospital that day and be run over by a bus! It has helped me to see my MDS differently, as a chronic condition to be managed rather than life ending. I'm so fortunate my progression is slow but always think of the many patients who are higher risk and have uphill struggles.
Lynne Elliott
